About ‘my pain feels like…’

Did you know that over 26 million people worldwide suffer from nerve pain? Did you also know that only 40% to 60% of patients achieve adequate pain relief? Many of these patients have a difficult time describing their pain in a way that allows doctors to really understand the potential cause and the impact on their lives. In fact, a study by Dr. Müller-Schwefe et al (2011) showed that doctors over- or underestimate the level of pain-related impairment in 80% of patients.

Yes, you read it correctly: 80% of patients! As a result, patients endure a drawn out ‘trial and error’ treatment approach over months or even years. Meanwhile, patients may continue to suffer physically, and also emotionally, psychologically, and socially. Does this sound familiar to you?

This is where the ‘my pain feels like…’ initiative aims to improve!

The main goal of ‘my pain feels like…’ is to improve the communication between patients and doctors. The focus is on nerve pain (also called neuropathic pain), which affects millions of people worldwide. A common type of nerve pain is localized nerve pain (also called localized neuropathic pain). Patients tend to describe their individual pain experiences in rather pictographic ways like “my pain feels like a volcano erupting”, “my pain feels like a hot iron”, or “my pain feels like a cut from a knife”. Often doctors don’t link these explanations to localized neuropathic pain as they learn the symptoms to be, for example, “burning pain”, “stabbing pain”, or “shooting pain”. This mismatch in language causes misunderstandings that can lead to an inefficient ‘trial and error’ treatment approach.

The ‘my pain questionnaire’

Our initiative enables patients to describe their chronic pain in a very detailed manner through the ‘my pain questionnaire’. How does it work? People like you and me invest more time and accurateness in thinking about their symptoms, describing them more precisely, and preparing for doctors’ appointments. Doing so forces us to reconsider our chronic pain, and the different ways that we feel it. This improves our self-awareness, allows us to better communicate our situation, and helps us get the most value out of the very short time that we usually have during doctors’ appointments.

The pain box experiment

Another component of the ‘my pain feels like…’ campaign is the so called ‘pain box’, a psychophysical experiment in which people can experience symptoms of localized neuropathic pain. The ‘pain box’ was developed at the Montescano Pain School in Italy to teach doctors how localized neuropathic pain feels, and to improve empathy and understanding for patients. The participant places his or her arm into a box in which symptoms of localized neuropathic pain are simulated on the participant’s forearm. Afterwards, the participant describes the feeling. This experiment allows doctors to better understand how patients describe symptoms, and actually feel what localized neuropathic pain patients feel. Besides educating doctors, presenting this experiment at international events (e.g. pain congresses) helps to raise awareness for the extreme burden from which patients with nerve pain suffer.

So, take the first step! Browse the website, fill out the ‘my pain questionnaire’ and talk to your doctor about how to manage your chronic pain.